This week I had the wind knocked out of my sails. I was diagnosed with RA. Rheumatoid Arthritis is an autoimmune version of arthritis where your body attacks the synovial lining/cavity of your joints and sometimes other organ systems like your eyes, lungs, vascular system, and heart. It manifests as pain that usually begins in your hands and your feet-exactly where mine started abruptly this past fall. I may have had RA for a while, but something triggered it prior to November. I suspect a teeth cleaning that left me with swollen sore gums for weeks.
I already have one autoimmune disease- Hashimoto’s Disease [autoimmune hypothyroidism]- I wonder if there is a limit, like how many AI diseases can you get at one time? I hope there’s a limit. I found out I had Hashimoto’s when I was in my late 20’s. I’m in good company, ie… there is a genetic predisposition, since both my sisters and my Mom have it and my late maternal grandmother did as well. I am cool with this; I have it on lock. I know this disease inside out, I self-titrate my natural thyroid [Armour], and I ignore well-meaning practitioners who tell me that my TSH is too low while disregarding other key blood markers and my physical well-being and self-awareness. I am not afraid of Hashimoto’s.
My Grandfather suffered from Dermatomyositis [another AI disorder]. My sister has RA. Yeah, that should have been a clue when my joints caught fire. But, it wasn’t. That was her disease; and one that I never planned on claiming. I did not have RA- I like to hike, I’m active, and I always have at least 2 jobs. I climbed a mountain in only average shape [for a 49-year-old] in April. I run on my treadmill even when my knees and feet hurt. I don’t like to take drugs of any kind and I do like to eat clean [although I struggle with a love affair with sugar that I am seriously trying to end]. I had just lost more than 40 pounds and I was feeling great. I was excited to turn 50! RA was an image in my mind that did not fit with the image I have of myself. So, when Dr. Belhorn said she was positive that I have it, she might as well have punched me right in the gut. When I got into my car after that appointment, I did not have the key turned in the ignition before I was sobbing. My denial had been so complete that I had an explanation for each puzzle piece. My knees were stressed from the Zumba, my joints hurt because I was allergic to wheat and all of this was related to my skin rashes and eczema. I even thought I might have lupus or psoriatic arthritis, maybe reactive arthritis, but I was pretty sure it wasn’t RA.
When you google RA images, you see this awful picture of a hand that might belong to the cannibalistic witch who locked Hansel up in a cage. I can imagine that gnarled hand reaching in to retrieve the bones he would hand her when she tried to determine his fitness/fatness for cooking. I know that it is not a death sentence, not directly, but it feels like a sentence of some sort– a sentence of having to put toxins into my body to prevent deformity and disability; a sentence of having to take handfuls of pills that make sick, a sentence of being tied to doctors [who belong to a profession I collectively mistrust]. So, I am researching and finding that there are a lot of weedy paths that you can get lost on and lots of scammers looking for an easy mark. It’s hard to know whether to trust the doctors and researchers because to hammer-wielding people, everything looks like a nail. I am not even sure if that analogy makes sense here, but I keep seeing clinicians holding hammers as I do this research. I know that a plant-based diet, low in sugar and red meat that limits grains and sugar is optimal. I know that fish oil, especially Krill oil helps. I know that I need to stop being so angry because inflammation is a factor of seething anger, but I don’t know exactly how to let go of the anger that I have. It’s a simmering, chronic anger that bubbles up when I sense injustice- real or imagined. It’s an anger that is as self-indulgent as I believe depression or boredom to be. It’s well hidden and most people who not have any clue that it’s there. Perhaps some more therapy is in order, but I digress.
In October I had my teeth cleaned. It wasn’t remarkable in any way and I have them cleaned like clockwork every 6 months. I do remember that the hygienist was a bit aggressive, there was bleeding, and my gums proceeded to hurt for weeks afterward. I was seriously worried I might have gingivitis and I was googling away. I followed this with gargling– salt water and sometimes hydrogen peroxide, and I switched to a gluten-free tea tree oil toothpaste. The gum pain eventually subsided, but then the joint pains began. I did not immediately connect the two.
November. The first pain was in my knees. They were a bit swollen and so tender they hurt to be touched from the outside. I thought it was the Zumba. It can be hard on knees. Then my elbow was so sensitive that sometimes when I leaned on a table with it I would react in extreme pain like being hit in the elbow or shocked. When I turned in the bed it hurt. My hands would go numb along with my finger tips. One day I felt like I was walking on a stone. I said that to everyone who would listen. “I feel like I am walking on a big rock.” Then, my big toe swelled and I could not bend it. I thought I had gout. Then my fingers began to hurt. My ring finger joint swelled so big I couldn’t wear a ring. It ached. My thumb and knuckle were swollen and hurting. I found some days I could not button a shirt. Every day, pulling up my pants after using the bathroom hurt because it required that I hook my thumb and pull upward. And the foot pain… as soon as my feet hit the floor in the morning, I am reminded that my feet are broken. It feels like walking on bloody stumps, or on feet that someone has smashed and broken the small bones in the center, under the balls. This pain makes me walk funny and does not subside until I manage to walk it off so to speak about halfway through the morning or by lunchtime. By evening, it is returning once I find myself sitting and then stand again. The stiffness is from my hips down through my knees and into my feet right through to the arches. The foot pain is the absolute worst.
I would still not have gone to the doctor about this– again the denial– if it were not for an acute shoulder incident in February that I related to a fall in the snow [but was really most likely a shoulder flare]. When I told the GP of my other joint pains, she diagnosed a rotator cuff injury, but did some blood work. The rheumatoid workup results led me to a referral to a rheumatologist. Before that appointment, I researched everything but RA. Even sitting across from Dr. Belhorn, my denial persisted and she called me on it as I cross-examined her about the discoid rash on my thigh, the possibility of lupus, Dermatitis Herpetformis, and reactive arthritis. She said that she would highly suspect RA in someone with my symptoms and an elevated RA factor. My factor is not subtle, though, it is almost 200 and that is indicative of only a handful of illnesses in the absence of a positive ANA. The family history cinches it. So, she took more blood and x-rays and pending the outcome of those results, she will advise on how aggressively to proceed. At this point, I am hoping for Plaquenil only, but I suspect she will also recommend Methotrexate. I am pouring over RA blogs to get a sense of what works for different folks and what kind of side effects are widely experienced.
In retrospect, I see things now that could have been clues. I felt last year like I was losing upper body strength when I could not win an arm wrestling match. It literally startled me as I have always been pretty strong physically. My inability to work the latch on my grandson’s car seat could have been a clue- I became more and more frustrated by this and had to ask my other grandson to do it for me [I blamed the car seat]. I had trouble with lids, I dropped things more. One morning this fall, I dropped my coffee cup for no apparent reason. It just fell from my hand shattering and spilling while my students rushed to help me. I have broken a bowl and two cups, at minimum, in the last 2 months. I fall a lot. There are so many and they keep coming back to me. The day I was diagnosed, I felt defeated. My pain felt worse and I felt sorry for myself. That was only two days ago– it feels like a week–but I am bouncing back already. I found a cool blog:
On it, there is a page of a mosaic of all sorts of people who have RA. They are overwhelmingly female, but they are quite diverse and they don’t look like cannibalistic witches. They look like normal people of all ages who are doing interesting things. That was a turning point. I said, “okay, I can do this.” Thanks, RA guy [& all the people who submitted their pics and profiles]. I needed that.